Category: Fibromyalgia

I really wanted to title this post Parent Guilt as I’m sure there are dads out there who feel guilt, but is it really the same as mum guilt? Maybe it’s where I live or who I associate with but I just don’t see dad’s racked with guilt the same way mums are. It’s like as soon as that tiny little egg is fertilised, millions of guilt signals are sent out to cover every inch of a woman’s body. Am I eating enough? Am I eating the right things? Should I exercise? Can I have a warm bath?

When I was pregnant with our daughter, I would get nervous before every medical appointment even if I had nothing to logically worry about. No unusual symptoms, no signs that anything was wrong yet there was this voice niggling away at the back of my mind. When I mentioned my nerves to my fiancé before our 20 week scan he was confused.

“What are you nervous about?”

“That something could be wrong.”

“The thought hadn’t even crossed my mind.”

Ahhhhh!!!!!!

Today I received a message from a very wise friend and, all of a sudden, light bulb moment. I told my friend that our daughter was making her way into our bed at night (how a 13-month-old does this on their own, one will never know) and I was concerned this would become a habit. Yet, on the other hand, I was getting sleep. Oh, sweet sleep!

My friend’s advice was to do what works for me and when it stops working, do something about it. *heavenly choir sings*

I told you she was wise.

Sounds easy, doesn’t it? It is. And should be. Do what works for you. When it stops working, try something else.

This goes, not just for mum guilt, but for all types of guilt. Pain guilt included. Feeling bad that you can’t work as much as you’d like because of pain? Guilt ridden about taking time out to rest? Do what works for you. When it stops working, try something else.

I may have just found my new motto.

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(I’m very aware that I’ve written about guilt a few times now. I even wrote an extremely optimist post entitled Guilt Be Gone. How cute. As it turns out, guilt is not the easiest thing to be rid of. For me anyway. A reminder to do what is best for you is sometimes just what we need.)

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As I got into bed last night my mind wandered to the mornings to do list and straight away I became excited. Body balance tomorrow! Woohoo!

Hang on a minute, body balance is exercise. I’m excited about exercising? Don’t I have a healthy disdain for exercise? Hasn’t exercise has always been a chore? Something I know I should do, but something I most certainly do not want to give up my spare time for.

I tried to think of the last time I was excited about exercising. Have I ever been excited about exercising?

Actually yes, when I was younger I exercised constantly. Swimming, netball, dance. Bloody hell, I was exercising daily. Why have I never thought of those activities as exercise?

And then it hit me. I enjoyed those activities. I didn’t spend 14 years of my life dancing because it was exercise. I did it because I enjoyed it. In fact, I enjoyed it so much that I continued dancing way past the recommendations of my physio and my parents. Hell, I completed my last ballet exam with my kneecaps taped in place! It was only when dancing became so painful that the idea of going to class started to feel like a chore that I stopped.

And there it is ladies and gentleman. The problem with exercise and chronic pain – the pain. When you have chronic pain everything hurts. Doing nothing hurts. Moving hurts. Exercise requires movement. Why would I volunteer to do something that is only going to increase my pain?

Well, as it turns out, in the long run, exercise (regular, moderate movement) will actually help manage chronic pain. It’s an idea that is hard to wrap your head around to begin with. We’ve been taught that pain is a single that something is wrong and we need to stop. Sprain your ankle? Stop, rest, and heal. Twist your knee? Stop, rest, and heal.

As it turns out, the stop and heal theory is correct for acute pain like a sprained ankle or a twisted knee, but stopping altogether actually does more harm for those with chronic pain. You see, with chronic pain there’s no injury to ‘heal’. The original injury has already healed as much as it’s going to, your body now requires constant, moderate movement (along with a number of other strategies) to keep it going. Yes, the starting is hard. But once you do, the benefits are there.

Okay, that all sounds well, exercise will help manage my pain. Well, tell that to my body at 5.30 pm on a Thursday night following a long day chasing after a 1 year old. It’s winter. The idea of changing out of a warm, fleecy track suit into Lycra and heading out into the dark, cold night is just not doing it for me. As much as I hate to admit it, the knowledge that, if I continue to head out into the cold I will eventually see a reduction in my pain levels is just not enough to get me moving. There is no end to the reasons I can come up with to justify staying home. It’s only one class, it’s not going to make that much of a difference. I’m tired, it’s been a long week, I should really rest. I’m still going to be in pain, it isn’t going to eliminate it altogether, what’s the point? I’m a little sorer than usual, I should probably rest….

So what was different last night as I lay in my warm bed contemplating today’s plans? What is different this morning as I sit in my very warm pyjamas still excited about the idea of changing into activewear and heading out to body balance? The difference is just that, body balance. I enjoy body balance.

I’m not a ‘gym’ girl. I’ve tried it before and I just cannot keep up the treadmill/weights routine. Sure I might be able to manage it up for a few months but even the knowledge that weekly gym fees are being sucked out of my bank account just isn’t enough to keep me going back to something I don’t enjoy.

While I’d love nothing more than to go back into the dance studio realistically I know my dancing days are behind me. My body just ain’t what she used to be! But that doesn’t mean I can’t find a form of exercise that I enjoy. Exercise doesn’t have to be pounding on a treadmill or lifting weights in the gym. Exercise comes in so many different forms and can actually be something you enjoy. With body balance exercise is no longer a chore, it’s something that is good for my body, something I choose to do, it’s something fun.

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Today was supposed to be a social day. I had breakfast plans with a couple of girlfriends and afternoon drinks plans with another. I was looking forward to today.

But rather than a social day, today has ended up being a lounge day. This is fibromyalgia. Fibro feels like pain, tiredness, isolation, sadness, confusion, fogginess, limiting, never ending.

Two nights ago I went to my usual yoga class. I say usual because I had been in a routine of going to this yoga class but, due to, well, life, I hadn’t been in around 4 weeks. So, naturally I was in for some pain.

I woke an hour or so after going to bed that night. My muscles had already started to stiffen. I was tight. All over. Sore.

I had an awful nights sleep waking every hour or so, every time I tried to roll over. Each time I woke my body was stiffer, tighter, sorer.

My daughter cried in the middle of the night. Her cot is on my side of the bed. All I needed to do was roll over, hand her a dummy and she would fall back asleep. Moving is the last thing I wanted to do. My body was so heavy. I felt weighed down, as though my body was made of stone. I didn’t want to move. I didn’t want to roll over. Maybe she’d stop on her own. I was so sore. So tired. I had to move.

I woke the following morning and start my usual routine of unfolding my fingers from the ball they had become over night. I notice my legs much more than I did the day before. Cement. It feels like I’ve been encased in cement from my waist down. So heavy. My butt, my legs. So heavy. I don’t want to move but of course, I have to.

I swing my body into a seated position on the edge of the bed. Rest. I place my feet on the ground, they unfold underneath me. I stand. Rest. I start to walk. Every fiber of my body is tight, stiff, sore.

The following morning, this morning, is worse. I wake and I lay in bed. The weight of my arm on my legs is too much. Too heavy. I have to move it. My chest feels as though I have been coughing all night. It’s as though I can feel every individual rib against my skin. The blankets are too heavy for my legs but it’s cold so I don’t want to take them off. I try to puff the blankets up, making a cocoon around my body. Tucked in at the sides, high in the middle so as not to touch my legs. I notice my shoulder blades. They ache. My lower back. My butt. My body is too heavy, my poor bottom is taking so much of the weight. But I can’t roll over. I don’t want to move.

My legs. As always, my legs are the worst. The cement feeling is back. Except for some reason I always imagine that if my lower half were encased in cement, it wouldn’t be in pain. Heavy, but not in pain. I am definitely in pain. My hips, my legs. They are definitely in the worst kind of pain.

I don’t want to move but I know I have it. If nothing else, I have to take care of my daughter. I have plans for today. Plans I’ve been looking forward to. Why did I make plans? I don’t want to do anything. Maybe if I get up, move around, warm up my muscles, I’ll feel a little better.

An hour before I’m supposed to be leaving for breakfast I’m still not well. Can I manage the half hour drive? Can I manage the seats in the cafe? I’ve never been there before so I don’t know the set up. Will there be room for a pram or will I have to carry my daughter in? She’s so heavy now. How close will I be able to park my car? What will the seats be like? Will my back take the seats? Will my legs?

I move to brush my daughters hair away from her eyes. My back. I can’t go. I need today off. I need to stay here. I need to rest. I need to get better.

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You may have heard, I write a little blog. I’m not being cute when I say little, I’m being honest. My blog gets a little traffic. I know this because every time I log in to write a post, I see my daily stats. So, last week I logged in as usual and, hang on a minute, there must be something wrong. A quick investigation and stats don’t lie. On one day, I had over 1,300 views of one post! It seems another Facebook page had shared my post on socialising with chronic pain and it was getting some traffic.

As it so happened, on that very same day I noticed a post I had written about fibro funk (which had been republished by The Mighty) had been shared over 3,700 times!

Now I’m not telling you this to big note myself. (Although, if someone else wants to tell me how cool it is, I’d be totally fine with that.) The reason I’m mentioning this is because it is so easy to feel alone. When I first became sick I felt completely alone. I was staying with my parents and was so lucky to have countless family and friends around to help, but I still felt very alone. I wasn’t like everyone else any more, this time I was really sick. My body was shutting down on me and the drugs I was taking to try and combat this were causing my brain to give in as well (or so it felt). When I was finally diagnosed, nobody I knew had ever heard of fibromyalgia (myself included), so how were they really going to help me, in my soul?

I soon became educated on my condition as did those around me. I enlisted the help of a team of great medical professionals, and found a supportive online community of those fighting the same or similar condition. After a while, I wasn’t so alone anymore. But, don’t be fooled, it is so easy to fall back into the feeling of ‘I’m all alone’. One bad flare and the alone feeling can hit you like a tonne of bricks. Right out of nowhere.

At times like this, when I can’t get out and see my friends, when I don’t have the energy to connect with people online, it’s important to remind myself that I’m not the only. And I know this because there are a hell of a lot of people out there reading about and sharing my thoughts and (much as I’d like to take credit for my amazing writing skills) I know it’s because these people connect with what I’m saying, because they are/have been there themselves.

You are not alone.

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When I first started this blog, I was writing pretty consistently. My pain specialist had reintroduced me to writing and I discovered how healing it can be. It also helped that I was working part-time and freshly practicing skills like pacing, mindfulness, and self care. Modest as I am, I considered myself a model patient.

The following year, things got a little messier. I moved cities, started a new job, had a baby, and started a new business. What should by now have been ingrained, automatic practices – pacing, mindfulness, self care – fell so far by the wayside that when I heard someone talk about pacing, I actually thought “Oh yeah, pacing. I remember pacing. I’m supposed to be doing that”. Not such much the model patient any more.

Now here we are, 2017. New year, new me? Let’s take a peak into my drafts folders. So many part written posts. So many titles of posts that I leave there under the deluded belief that I will one day find time to write down the million thoughts running through my mind. Because, let’s face it, that’s what I’m missing here. Time.

As anyone with a chronic condition can tell you. Time is no longer your friend. How can I find the time to take care of myself around an otherwise full daily schedule? Or, more accurately, how can I find the time to fit in a full daily schedule around taking care of myself?

As any parent can tell you. Time is no longer your friend. How can I find the time to take care of another human being, around an otherwise full daily schedule? Put the two lives together – chronic and parent – and you have one doozy of a time problem on your hands.

Some days (most days), my 7 month old daughter will sleep only in 20 minute intervals, intervals that are few and far between. Some days (most days), I feel like I’m living my own personal Groundhog Day. Clean bottles, sterilise bottles, fill bottles, feed baby, play with baby, attempt to get baby to sleep… While my body automatically works through each step, my mind races with everything I need to get done that day, that week, everything I feel guilty about doing, everything I feel guilty about not doing, everything I don’t have the time to do.

I swear, at any moment my head will explode. All of the thoughts swirling around in there are fighting, pushing desperately to make their way to the front of the queue. Now they’re wearing boxing gloves, knocking down each idea, reminder, chore, question, and list (oh, the endless lists!) who dare jump in front of them.

Today however, something silenced the otherwise obtrusive thoughts. As my daughter woke from her very short nap demanding a bottle, I looked at her, stopped and turned down the volume. Not too long ago I didn’t think I would ever have children. While being a mother was something I always knew I wanted, with my health the way it was, it did not realistically look like I would be able to manage pregnancy let alone motherhood.

Now here I am, looking into the cot at my beautiful, healthy, happy 7 month old baby. And it clicks, I need to stop. Call it pacing, call it mindfulness, call it whatever you need to for it to make sense to you. For me, it simply became clear that I cannot do everything at once anymore. I cannot do everything in one day anymore. I don’t need to do everything at once or even in one day. What I need to do is live in the moment. Be thankful for my life, as it is. Not how it once was. Not how I would like it to be. Just how it is. Right now. Because right now is good.

(PS Yes, my legs hurt, my back hurts, my wrist is playing up again, I’ve got a headache, my jaw is aching, I’m tired beyond tired. But right now, right now I’m staring at my beautiful, healthy, happy 7 month old baby. Right now is good. Right now is great.)

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I started writing this post in January when New Years resolutions were all the rage. Remember them? I’ve only made one New Years resolution before and that was about 8 years ago. I could say I am against the arbitrary nature of making grand declarations of change simply because the calendar flips to January 1 but, let’s be honest, that has nothing to do with it. The truth is, I have absolutely no faith in my ability to hold myself to any such declaration and don’t need to have my nose rubbed in my failure by those holier than thous who are still on the path to a happier, healthier life by January 2.

Now, having said that, a little time away at the beginning of January did get me thinking and I came to a decision. Dun, dun, dun…. I am done fighting my body.

That’s it. It might sound odd to a healthy person but, to me, it makes complete sense. I am done fighting my body. This means I will no longer fight my body to do the things it cannot, such as continuing to move/work/interact past its tolerance level, staying awake when it needs to rest, eating foods it clearly does not like…

A whole lot of ‘no longers’ comes with this new philosophy, but so do a lot of ‘I wills’.

I WILL give my body the regular exercise it needs even (especially) when this is hard to do.

I WILL fuel my body with the healthy foods it craves (but I will not beat myself up for the occasional indulgence*).

I WILL take my medications at the correct time each day.

I WILL regularly give my body and mind time to rest and recharge.

I WILL thank my body for everything it can do.

I WILL encourage my body to go further, to become stronger, to defy expectations.

I WILL put my body first.

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* Very important side note: I refuse to define ‘occasional indulgence’ as this changes on a day to day, needs-based basis. Today a few squares of chocolate might be enough to satisfy the sweet tooth. Tomorrow, an entire block of Cadbury’s Marvelous Creations might be required to get me through a bad flare. Who knows? Basically, if I fall off the wagon, it’s okay, it doesn’t matter. What matters is that I get back up.

While this post is in no way sponsored by Cadbury’s Marvelous Creations, I am more than happy for any and all of my posts to be. I’m looking at you Cadbury, get in touch (wink, wink).

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Last week I went to buy a carton of beer for my fiance. Knowing I wouldn’t be able to carry the carton myself, I picked up a trolley from the supermarket next to the bottle shop as I’ve done many times before. Unfortunately, being Christmas Eve, the shop was pretty busy and had therefore instituted a ‘no trolleys’ policy.

Not wanting to make a fuss, I parked my trolley aside the others outside the shop door and ventured inside. I picked up two bottles of champagne (I did have two free hands after all) and headed to the register.

“I would like to buy a carton of Summers” I told the lady behind the counter, “but I can’t carry the box.”

“Okay” she replied casually turning to her co-worker. “Dave*, this lady wants to buy a carton of Summers but can’t carry it. Can you grab it for her when you get a chance.”

As the lovely lady turned back to ring up the sale and ask about my holidays, I received the eyeballing of a lifetime from Dave. “Okayyyyyyyyyy”, he replied while looking me up and down with the quizzical why-can’t-you-do-this-yourself look.

My immediate reaction was to explain myself, to make Dave feel less uncomfortable about helping me. “I’ve recently had a c-section”, I considered saying. Everyone knows you can’t lift anything heavy after a c-section. Everyone will be more comfortable if I just say I’ve had a c-section. It’s not like it’s a total lie. I did have one, 6 months ago.

As the c-section remarks raced through my head, another thought charged in and shoved them out of the way. I don’t actually have to explain myself. I can’t carry the box, that’s it. This bloke doesn’t even have to go out of his way to help me, it’s his job.

And so, rather than revert to my usual behaviour of making excuses, justifying why I need help, or lying because it’s easier than explaining the truth, I turned to the lady at the counter and told her my Christmas Day plans.

As we finished our chat, Dave walked over and told me he had placed my carton into the waiting trolley outside. Again making sure to give me a long once over, looking for any visible sign of my inability to do what he obviously believed to be an easy task.

Not my responsibility, I thought as I left the shop. It’s not my job to make you feel more comfortable about my limitations. It’s not my job to explain why I have limitations. The only responsibility I have is to myself to ensure I know what my limitations are and that I adhere to them.

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*NB Name has been changed due to my awful memory. I have nothing against Daves, it’s simply the first name that popped into my head.